Aashayein 2013 in Delhi

To be honest, I expected a low turnout at our first Aashayein in Delhi. Many reasons were given. Delhi patients don't come for these kinds of events. It was very cold. Very few people would venture out on Sundays. I was also apprehensive about the how the patients that would come would behave. I had heard all kinds of stories about 'Delhi patients'! They are rude, they are not pleased easily, they are very rough!

Thankfully, both my fears were unfounded. By 10:30 a.m., the hall was full. The patients and family that attended were excellent. All well behaved. All very curious. All very eager to learn more about their disease.


Initial glitches

When we reached the hall, we found that the arrangements were still incomplete. At the last minute we were told that the audio cable from the laptop to the amplifier was not long enough which would make playing audio from the laptop impossible. The way we were told, it seemed that there was no solution. However, I asked Mandeep, our BD guy from Delhi to talk to them and sure enough, the cable was arranged! All the initial glitches were fixed soon enough and we were all ready in time!

My Hindi surprised me!

I spoke almost entirely in Hindi. I am not very proud of my Hindi generally. However, I didn't do a bad job at all. The words came easily. I also used some fancy phrases. "Jahan na pahonche ravi, wahan pahonche kavi!" when I was introducing Dr. Madan, who did some poems and "Inhone bada hi madhur kanth paya hai" when I was introducing Asif, who sang some songs.

My entire talk as well was in Hindi and I was really happy the way it went.






Questions, questions, questions

We had two nephrologist talks, one dietician, one patient and one vascular surgeon talk about various things. One thing was common among all. Everyone had a ton of questions after every talk. All kinds of questions. One thing which you would imagine is that the questions ought to be generic questions and not about some individual condition. However, a lot of questions were very specific. This goes to show that patients just don't get enough time from their doctors. In a country with more than a billion people, there are only 800 nephrologists! How much time can a doctor spend with each patient?

Each patient is different with a specific set of problems. Nephrologists in our country are very, very busy. They don't have the time to look up specific issues and are forced to adopt a one-size-fits-all approach.

After every talk, we had a hordes of patients swarming around the speaker asking all kinds of questions! The funniest scene was patients gathering around the vascular surgeon pulling up their sleeves and asking the harried doctor to check their fistulae!

Lunch



The lunch was usual Aashayein style - one counter for patients and one for the rest. The patient lunch had no salt and was made by leaching vegetables and not using other things forbidden for dialysis patients. As Sandeep and I made our way to the lunch counter, I headed to the patient counter. Sandeep wondered why I was going there. I don't have any diet restrictions despite being on dialysis because I do daily dialysis.

"To express my solidarity with the patients! They go through a lot!" Sandeep followed me there. He wanted to express some solidarity as well, I presume!

After my first helping, I moved to the non-patient counter. Sandeep asked me why? "Family members go through a lot as well. Might as well express some solidarity with them!" ;-)

A great experience

At the end of the event, I had many patients and their family members come up to me and thank us for organising the event. Many of them said that after seeing me, they got tremendous hope that they too can live long, productive lives. Until now, they thought that dialysis meant end of life as they knew it. But now, they were inspired that they have a shot at a normal life as well.

This was gratifying indeed. If all the effort you spent has made some difference to the people who you wanted to reach, it feels really good. In the middle of the run up to the event, I had got a little tired with the amount of effort that goes in to this and the enormous pressure that is there on all of us preparing for the event. I was wondering if it was all really worth it.

At the end of the event, I got my answer. A resounding YES!

Comments

indu dhingra said…
can i get myself registered with aashayein so that i can attend the next get together of patients.

Presently I m undergoing CAPD.

indu dhingra
Kamal D Shah said…
Unfortunately, we don't know the date of the next event. So, we cannot register. Please keep in touch with this blog and the Aashayein Kidney Foundation and NephroPlus websites and the information will be posted there.